"Tried everything, you'll just have to live with it" (severe asthma)

Has anyone been told by their GP, nurse or consultant that they've tried everything and they don't know what else to do? I am feeling hopeless.

34yrs, mum of 3yr old, working, lots commitments/interests, dieting, enjoy cycling/swimming/walking when well.

But a bad 5 months of chronic asthma including days in hospital, so many antibiotics and steroids, nebuliser daily at moment, chest X-rays, blood tests, allergy tests (on skin). They just say it's bad asthma but for me this is unmanagable.

I have tried various inhalers and montelukast, but can't remember what else. Hoping someone has some ideas for me to share with my GP (consultant appt isn't til mid May!)

Thanks in advance.

35 Replies

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  • I've not actually been told this but I feel that is the general opinion, all I appear to be doing is managing the symptoms.

  • I was told by my previous Respiratory Consultant at my local hospital that there was nothing more he could do for me, however, thanks to a very determined GP I was referred to specialist centre for my asthma.

  • Hi there, this is a common story for many of us with asthma. Sometimes it's hard to get a break and it seems impossible to carry on the way things are.

    Everything seems beyond your control. I came back from a consultant appointment one day very upset after he pronounced

    " I find about β…“ of my patients get better β…“ stay the same and β…“ get worse. You're in the worse category, there's not much I can do".

    I've also had other crass remarks like, if you question what I say why don't you set up your tent in A&E.

    I decided to take back control, I got aggressive with my peak flow diary, I charted it on my laptop in excel. I kept very detailed notes about symptoms and inhaler usage, and circumstances. I.e. I find an indoor swimming pool can set me off. I would go to appointments at the hospital with print outs and notes. All of this was really helpful in trying to find out what was going on.

    Also, my asthma was much much worse when the kids were coming home from school with every bug under the sun. In fact prof. Sebastian Johnston who is an Asthma U.K. Research doctor, said it was very common for parents with asthma to get much worse when they have little kids.

    I know that this may not be much help, but asthma does not stay the same, there will be light at the end of the tunnel.

    It's great you're exercising, I would say try and keep doing something even if you feel crap.

    Keep your chin up, it's a sh@t disease

    R

  • Have you tried theophylline or spiriva?

    Have they added an additional inhaled steroid inhaler. I take two maximum dose steroid inhaler that are a different chemical name!

    Good luck!

  • No not heard of them. X

  • Are you under consultant care?

    Ask to try them!

  • Awaiting re-referral to consultant at moment. 1-3mth wait though. Was under a consultant 3yrs ago but then it became better managed but without much change of drugs etc. Just change of season really. I'll ask them. Thank you!

  • I sympathize. I hate to say but there are a group of us for who getting control of the symptoms is a daily battle. I would ask for a referral tons specialist Centre. This will probably involve s journey, and for me a day of tests. If nothing else it confirmed to my local team we were doing everything we could.

    I wound start keeping a list of what you have tried and why it didn't work e.g. No difference, side effects.

    Lastly stay positive. You have difficult asthma but it doesn't define you.

  • Yes i was told i had bee given given all the medications. I insisted i get referred to specialist asthma clinic where right away they said i hav ensinophillic asthma and that is why steriod inhaler wasnt enough i need to be taking steriod tablet daily. Hate steriods but its the first time my asthma is being controlled. I hav been going to doctors for 4 years. I am on maintenancecdose 5 mg daily and seritide inhaler and monthly reviews at clinic with specialist consultant. We have to beg for help.

  • Specialist hospital is the answer to find out if it can be anything else with the asthma. Keep strong. Hope you feel better soon.

  • Thank you. On my nebuliser twice last night and then couldn't sleep. Back to GP this morning as steroids run out. Not holding out any hope for any difference, but I'll let u know if there is!

  • There is a lot of wise advice here - you and your partner/parent have to fight the NHS with you, and for you if you are ill, to get the right treatment. You have obviously got all the right things going for you and your life is busy, but can you find a dedicated time to concentrate on relaxing? If you can afford it you can go to a centre of some kind, but just having uninterrupted time, sitting back, putting on some quiet music, letting your mind drift for half an hour, can help. Unfortunately, asthma control is all about managing it, and the condition itself is enough to make anyone anxious, but you might find that relaxation helps a bit. I hope so. Good luck.

  • Very wise too. Thank you. I started the year with a 2 day retreat. I wanted to continue doing this at intervals and not done anything of the sort since, in fact life has got manic again. I will be more intentional. Both daily for a short time and regularly for a few hours!

  • So a MONTH of steroids prescribed and montelukast AGAIN even though I told her it doesn't help. And she's upping the importance of my referral to chest clinic.

  • When I started taking montelukasts I didn't think they did any good, but my American consultant really changed my mind. And insisted that I continue taking them. He has done quite a bit of research into them and believes they can mitigate the severity of asthma response to viruses. If I look back at how ill I have been from colds since I started taking them, I definitely think they make some difference, which is not to say I can't get pretty sick, but I seem to get less of a mighty crash.

    I know It all seems awful at present, and steroids can make you very depressed and tearful, my mood changes completely, my hubby calls them the 'mad pills' but if you can get your lungs to calm down it's probably a good thing.

    I do hope you get referred to a good specialist center. There's lots of stuff consultants can do that GP's can't.

    Feeling for you, I hope you feel better soon

    R

  • Yes my husband also hates me being on steroids for same reason!

  • My GP has put me on a daily dose of steroids, usually 5mg/day. He is hoping to reduce it a mg at a time to a level that keeps me stable. Then I have back ups on hand for when I get bad. Then I can increase the dose for a few days until my symptoms improve. If I know I have a chest infection, I get it treated immediately and I don't wait to see if it is a virus or not. It isn't ideal to be on steroids for so long. I am 40 and he thinks I am too young, but he is also aware that nothing else is working. There are things they can do to try to counteract the long term side effects. You know your body best and a good doctor will use you to help control your symptoms. Good luck and I hope you get some help soon. x

  • I have been told this in the past. By an awful GP when I was having a bad time. I eventually got sorted out by a very good consultant nurse! Like you I exercise a lot when well so it really gets to me when I can't do the things I want to. I find that If I do the maximum that I can do on any given day I can slowly increase it..... So long as I don't overdo it! The other thing that helps is to make a detailed daily symptom & peak flow diary. It really helps the medical people see what's going on on paper. Good luck!

    Emster

  • A few people have said that. Thank you!

  • There are things you can do. The things to do are not cures, but they hopefully will help you reduce the symptoms.

    A lot of asthma can be poor muscle control. There are the development of habits that people do not realise will make breathing difficult. Alexander Technique lessons will help with this.

    Many adults have a very poor sense of body. This can cause you to do things without realising how poorly that they can make you feel. Yoga in a class should help you become more aware of your body.

    You can have micro-cramped muscles which impede breathing. These need releasing. A McTimony chiropractor can help with this.

    There is mindfulness and meditation which can help you become more aware of yourself. This needs to be learnt in a group under a teacher so that you are made aware of errors of understanding.

    All of the above need to be done together. Anyone by itself will not be as helpful as all of them together.

    Please press reply for more information.

  • Yes this is all great advice. Thank you. I've been meaning to start a yoga group!

  • Have you thought about a TCM (Chinese) doctor. Apparently they can work wonders. A friend of mine cannot see past them. Find a reputable one who has a proven track record.

  • Yes I tried 2 different Chinese doctors and herbalist. Forgot to add that to the list!

  • It did take my friend over six months to get cured of her ME/CFS. I suppose what works for one person may not work for another.

  • Hi Loosingit, there are plenty of new treatments all the time I don't think you should be told to give up. I would ask for referral to a different hospital. Take carexx

  • Im gonna suggest something that most doctors completely overlook try gaviscon as reflux can cause breathlessness and coughing and can mirror asthma symtoms youve got nothing to lose

  • Thank you. I also have GERD and take omeprozole daily x

  • How many do u take

  • 2 tablets each morning. It controls the gastric reflux. I was in hospital wit that 18mth ago so I can spot the differences. This is definitely asthma. Thank you for being interested.

  • No worries

  • And do you take gaviscon as well

  • I was in the same situation a year ago - it takes a long time for the lungs to recover. Don,t give up on the treatment - I'm on Fostair, Montekulast, Fexofenadine and Ventolin as a reliever - it took many months after coming off the steroid tablets to get back to some normality - but hang in there you will get there! Don't give up the exercise - this is VERY important - and even now when I feel really grotty - I still make myself go swimming as afterwards things I feel so much better - I try and swim 5 times a week. Take care and I hope things improve really soon.

  • Have you tried giving up dairy products for a week?

  • I agree with previous comments .You have to be the driver in your own care - not easy when you're feeling so sick and frustrated !

    I had been told by my Consultant that 'all inhalers are the same ' but clearly not so . My GP has always believed I have COPD ,I am a non smoker ,my Consultant adamant it's Asthma.A blood test arranged by myself confirmed I was Alpha 1 Antitrypsin deficient ,which affects the lungs. I have been on Fostair preventer inhalers and Salamol rescue plus oral steroids prednisolone for years .I also tried montelucast ,with no relief .But I recently requested to try Spiolto Respimat and I can't believe the difference.I'm back in the Gym and tapering off the pred.Even better my hated steroid belly is rapidly receding .My pred 'appetite' is gone ! Yay. Obviously I can only hope it's something I can continue with.But so far so good .I'm just lucky I have a lovely GP who treats me as a co conspirator.

  • Hello, are you on birth control pill? Apparently, I have read that Asthma can worsen due to hormone fluctuation, Thats why woman have in general more severe asthma than men. Taking the pill, help some woman.

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